‘Saving a life is one of the best things you can do’: Organ recipients share their life-changing stories

MACUNGIE, Pa. — A 13-hour flight never stopped a Macungie couple, Wendy and Barry Reiss, from boarding a plane to their favorite destination: Hawaii.

But an illness did.

For more than two decades Wendy Reiss lived with the symptoms of a rare disease that would only grow worse as time went on.

“One in 25,000 people have my disease and 1% of those 25,000 people need a transplant, which makes it very, very rare.”

Wendy Reiss

“I went to a nephrologist and they diagnosed me with nephrogenic diabetes insipidus,” Reiss said.

“With that I was drinking three and a half liters a day of fluid and putting out six and a half liters a day of fluid and I was continuously dehydrated.”

The couple’s adventures seemed to be coming to an end.

“Every day after dinner, I would fall asleep like one hour later because my kidneys could not process food that I had eaten and it would just knock me out for the night,” she said.

Reiss and doctors decided it was time for a transplant.

“One in 25,000 people have my disease and 1% of those 25,000 people need a transplant, which makes it very, very rare,” she said.

Time was of the essence.

Those waiting on the transplant list for a kidney wait an average of five to seven years before receiving an organ.

So her husband stepped in.

‘The best things you can do’

April is Donate Life Month, and Gift of Life Donor Program is an organ procurement program that serves eastern Pennsylvania, southern New Jersey, and all of Delaware.

It works with hospitals and community partners throughout the region serving 11 million people.

The organization is setting out to help those people, while simultaneously celebrating its 50th year.

“Honestly, saving a life is one of the best things you can do, right? And this is a terrific way of doing that. Signing up as an organ donor is super important.”

Todd Franzen, the head of advocacy programs and events with Gift of Life

According to Gift of Life, 5,000 people in the region are currently waiting for an organ transplant, most of whom are waiting for a kidney transplant.

“Our goal is to register 5,000 people during the year through this campaign to honor those 5000 people waiting in our transplant area,” said Todd Franzen, the head of advocacy programs and events with Gift of Life.

“Honestly, saving a life is one of the best things you can do, right? And this is a terrific way of doing that. Signing up as an organ donor is super important.”

Those interested in becoming an organ donor can do so by registering at the DMV or going to donorsone.org and clicking register.

Wasn’t even a question

Barry Reiss said that as a husband, it wasn’t even a question of whether he would be a donor for his wife.

“Why would anybody not want to do something for their spouse to have them around for that much longer, rather than have them suffer?”

After months of testing, it was determined he was a match for his wife.

“He didn’t know 30 years before that he was not going to be my husband, but my kidney donor.”

Wendy Reiss

“He didn’t know 30 years before that he was not going to be my husband, but my kidney donor,” Wendy Reiss said.

The couple turned to Lehigh Valley Health Network, where Wendy Reiss worked, for the operation.

“About 80 percent of the list waiting for a kidney transplant for an organ transplant today are kidney transplant recipients,” said Dr. George Rofaiel, Lehigh Valley Transplant Institute’s chief of transplant surgery.

“In our program, we do kidney, pancreas and, hopefully soon, liver transplantation and also in this hospital we do bone marrow and cell therapy.”

Rofaiel performed the surgery, which was more complicated than a typical kidney transplant.

He had to remove not one, but both of Wendy Reiss’s kidneys and replace them with her husband’s donor organ.

The doctor “was concerned as to whether or not her old kidneys would somehow affect her new kidney once she had that in,” Barry Reiss said.

“And so he had talked to Wendy about the possibility of removing both or kidneys at the same time that she was going to receive mine.”

‘Safe and relatively efficient’

Wendy Reiss said taking both kidneys was unprecedented.

“He or no one else — because there isn’t any literature in the world — has ever done that; taking both kidneys out for nephrogenic diabetes insipidus at the same time,” she said.

“But he felt it was the right thing, and from my research we agreed that we were going to do that and it was the best choice.”

The transplant worked and Reiss said she felt immediately better.

“It is a very, very safe exercise for donors. As a group, they live just as long as the average population.”

Dr. George Rofaiel, Lehigh Valley Transplant Institute’s chief of transplant surgery

“I’ve never had such quality of life,” Wendy Reiss said with a chuckle. “When Dr. Rofaiel first met me, he said the first thing he said is, ‘You’re gonna feel like a new person after the transplant.’

“I said, ‘What do you mean I feel fine?’ You’re gonna feel like a new person and I absolutely feel like a new person. I have so much energy I’m just so excited about life.”

Rofaiel said the main concern about many people giving or receiving an organ is about the safety of the donor.

“It is a very, very safe exercise for donors,” he said. “As a group, they live just as long as the average population.

“Our donors are back to work within days instead of weeks and so it’s not just safe, it’s safe and relatively efficient.”

Prior to getting sick, Wendy Reiss worked as a nurse doing scheduling for Lehigh Valley Health Network.

When the symptoms became unbearable, she had to leave the career she was passionate about. The transplant had changed that.

“In three months I went back to being an RN at the hospital where I’ve now worked in my 40th year,” she said.

“I went back to my role as an RN in the GI lab, but in January I was able to go back to the job that was the love of my life, the operating room, and I was there for 32 years and I’m doing both jobs now.”

‘Still waiting for the end result’

Wendy and Barry Reiss are an organ donation success story where the outcome was in their favor, but not everyone has the same result.

“The wait time for kidneys can be over five years, five to seven years based on some different factors,” Franzen said. “For other organs, it’s shorter, but frankly, any time of a wait is too long.”

“It’s like a roller coaster. You never know when they will call you. It can be any time and lots of anxiety, but I’m hopeful that the right one will be found for me.”

Danialle Brott, a mother from Gilbertsville, Monroe County, who needs a pancreas

Franzen said, “the demand is currently greater than the supply and so the best way we can address that and help the people that are waiting is to get more people to say, ‘Yes, it’s really pretty clear.”

One person awaiting a donor is Danialle Brott, a mother from Gilbertsville, Monroe County, who needs a pancreas.

“It’s like a roller coaster,” Brott said. “You never know when they will call you. It can be any time and lots of anxiety, but I’m hopeful that the right one will be found for me.”

Brott has been a Type 1 diabetic since she was 9. She developed pre-eclampsia during her second pregnancy and needed a new kidney.

She recalled how her young daughters reacted.

“When I was on the kidney list, every day they would pray that I would get a kidney, at dinner time,” she said.

Their prayers were answered when Brott attended physical therapy. Her physical therapist offered her kidney to Brott and was a match.

“I was just shocked that someone that I don’t know, I didn’t know her before that, would want to donate to a stranger,” she said.

However, her transplant journey is not over. Now, her illness requires her pancreas to be replaced and so she remains, once again, on the transplant waiting list.

“I have gotten three phone calls that unfortunately the organs haven’t been viable for the pancreas,” she said. “So I’m still waiting.

“I am still continuing my journey, but still waiting for the end result.”